Open letter to professionals

Open letter to all the professionals involved in our life.

We have 5 children three of whom have complex needs. In order to adequately meet the needs of the whole family we need the support of various agencies and a large number of professionals. This does not mean we do not have a right to a private life...it does not mean we give blanket permission for every aspect of our lives, thoughts and emotions to be discussed without our inclusion. Please consider the information you are discussing, would you be happy for similar aspects of your life to be discussed across agencies in the manner you are discussing our lives? If it needed to be discussed for some obscure reason would you not prefer to at least be able to defend yourself and put right mis-truths and twisted truths.

Having children with disabilities and serious health issues is stressful enough...many families forgo all right to support and help because they feel contacting Social Services would invite an intrusion into their lives that they do not want. More and more I am understanding why they feel like that. We frequently feel we live our life in a goldfish bowl. We live a life that is different to many...however with the information that professionals have and the view they have had of our life it should not be to difficult to actually accept that we do have a good knowledge of our children's needs. Surely it would be far more concerning that we had cared for children with complex needs for so long with out an understanding of their medical conditions and knowing how to recognise when things are not right. I find being criticised for having a good medical knowledge bizarre to say the least.

Surely professionals working with families of children with special needs should be working, thinking and acting in sympathy and support not in an atmosphere of suspicion, secrecy and criticism. Discovering that professionals have acted and spoken behind your back leads to a lifetime of fear and suspicion. It does not help to work towards openness and support. It leads to mistrust and more anger.

Families need to have support that is there for them...not feel they are begging and by getting the support they need they are detracting from the needs of another family worse of than them. The various Acts of Parliament lay down legislation, giving rights to disabled people and their carers. I hve been criticised openly and behind my back for using the complaints system and the channels beyond that to get my children's needs met. I make no apology for so doing. I will continue to fight to the end of the road to ensure that my children's needs are met to the best of my ability. I will also encourage other families to use the same channels... it is my belief that by encouraging all families who are able to fight in the same way we will enable those without such ability to get their needs met first time. Families with children with disabilities are beginning to find support amongst each other to stand up and fight. The hope is this will lead to government giving adequate funding to the various agencies who need adequate funding in order to respond reasonably to the needs before them. We are aware of the funding issues but those issues are not our problem to resolve...Central Government has a responsibility to adequately fund the agencies to whom they delegate the responsibility, it is surely the role of the agencies hierarchy to fight that battle and prove the inadequacies of the funding rather than putting that excuse back to the service users.

My lasting plea then to the professionals who deal with our family. When writing your report, reporting to your superior, generally chatting with other colleagues, speaking in a meeting, or whenever your actions or words have a bearing or direct consequence on our family...please consider what those actions or words would mean if it was your family being discussed.
Consider whether there is any reason to make those comments without our knowledge or opportunity to correct wrongs. One last comment. If i request to speak to you in confidence or off the record, you have the opportunity to answer that question with a yes or a no! Please remember your answer...going ahead and discussing off record or in confidence conversations constitutes lying to me!

I am now confident that I am under constant observation, my every thought, word and deed will be scrutinised by those who see themselves as far superior to me and who execute their parenting skills in a far better way than I could ever imagine and therefore have every right to assume they know my children's needs and what would help me meet them far better than I could ever assume to!

I apologise, therefore, for any misdemeanor I have in your eyes committed...however, I do not know what the future holds but I am glad I know who holds the future...can you say the same.

Here in the Grace of God I stand.....how about you?

I know that my Redeemer liveth.

I know that I can hold my head up high in the knowledge that my actions words and deeds in regard to fighting to have my children's needs met are based on a desire to enable them to reach their potential, in order to give them the best quality of life we can and my conscience is clear!

We will all stand before the Throne of Grace...I am assured of my cleansing in the blood of Christ...not by anything I have or have not done but through the shedding of His blood at Calvary for me! My name is written in the Lambs book of life, engraved on His hand and written in His heart.
Hallelujah!